It's Rare Disease Day 2025!

Rosie_Scope

It's Rare Disease Day 2025!

28 February marks Rare Disease Day. It's a day dedicated to raising awareness and funds for people and families affected by rare diseases across the globe.

A disease is said to be rare when it affects fewer than 1 in 2,000 people. It's estimated that over 300 million people worldwide live with a rare disease.

Living with a rare disease can be difficult. When your condition is rare, there's much less research being done to understand your conditions and fewer specialists to offer the right kind of help. Many people struggle to get a diagnosis in the first place, let alone the treatments they need to live well. This can be made even more difficult in countries where basic healthcare is already difficult to access.

The aim of Rare Disease day is to work towards equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.

If you'd like to get involved, Rare Disease Day are encouraging people to 'light up for rare' at home:

#LightUpForRare - Rare Disease Day 2025

But just chatting about how Rare Disease affects you can help raise awareness and get the conversation flowing.

Do you or someone you know live with a rare disease? Will you be doing anything to mark the day?

Bluebell21

My daughter had a rare disease called Severe Pulmonary Hypertension. There are only 9 specialist centres in the UK that treat and manage this condition. No cure. I will be lighting a candle to mark the day.

Rosie_Scope

Sending lots of thoughts your way @Bluebell21 💜 I'll be lighting a candle tonight too

Bluebell21

Thank you @Rosie_Scope

michael57

cluster headaches and not being able to have the injections ever again on a plus side 6 or 7 times a day and night its the only pain i have out of the frying pan into the fire haha

Ranald

My Becker Muscular Dystrophy is quite rare (1 in 20,0000). it's why i never bother with lottery tickets